Kobro's Cancer Crew #9: Limpus & My First Tattoo

Wow, busy couple of weeks! Sorry for not sending an update earlier. A few of you have reached out to check in, and I promise you, I'm not dead.

Currently waiting on a blood test to determine the plan for the next infusion, but overall things are looking good. The next update will cover a more comprehensive update on the current status of the Lymphoma.

Spoiler alert: we're kicking Lymphoma's ass, as anticipated.

The one place that's been bugging me is I've gained ~27 pounds over 40 days. I went from 190lbs (early May) to 217lbs today. The steroids they have me on are making me eat a ton, so gotta watch that. The last time I was overweight was in 4th grade when I was mistaken for being a girl on a weekly basis.

Here's a selfie I took other day to show some friends how I'm getting a lil chunky compared to my typical less chunky state. I know I look fine, just spooky to see yourself put on weight in such a short time-period.

I'm also getting physically weaker which bothers me, but whatever. After all this is done I'm gonna get crazy in shape. I sorta need to get in really good shape and health because it turns out that I'm more prone to getting other kinds of cancer.

Recently found out that those treated for Hodgkin lymphoma have an increased risk of developing secondary cancers (some sources say 3 to 5 times higher than that of the general population and another says 70% higher). For whatever reason I'm especially more prone to lung cancer I guess? I've never been much of a drug person, but like maybe once every few months I'd smoke. So… probably shouldn't do that anymore.

Now, speaking of sins and things that my grandparents are learning about in this newsletter, let's talk about tattoos.

My First Tattoo

First… I am proudly jewish, and jews aren't supposed to get tattoos. That said, it's not like a huge deal.

There's a whole thing around not being able to be buried in a jewish cemetery if you have tattoos, but I did some research and it seems like that's more of a myth / only for extra conservative (religiously conservative) cemeteries.

Even Chabad said it's not a deal breaker (although it's "forbidden")

I've wanted a tattoo for the past 7 years, but I haven't quite pulled the trigger on it. Feels like that time has come. God will forgive me on this one, we had a little pow-wow the other day.

Now, the fun thing here is YOU are all gonna be a part of that tattoo (yes even you Grandma and Grandpa who I can't imagine will support the tattoo idea LOL).

I had this idea at 2:00am the other night, so bear with me…

Meet Limpus, our arch nemesis.

I made Limpus using some fun AI tools, took 10-minutes at one of my 5:00am diner sessions between work emails. Don't worry, this will not be tattoo'd on me… I'll cover the tattoo in a few minutes.

Who is Limpus you may ask?
Limpus is the personification (think that's the word) of my Lymphoma, and we are in the middle of a battle against Limpus.

Why the name Limpus?
I was thinking of a name, and it was the first one that popped into mind. It reminds me of a rich kid I hated in 4th-8th grade basketball on our rival team (Manchester). He was always a little bit better than I was and he was such a poor sport. I had some real beef with this kid.

Limpus also sounds sorta like Lymphoma and doesn't have any other associations with it that I could think of, so it can be sorta silo'd off as this enemy for all of us.

It's also just a goofy name. What kind of thing is named Limpus? It sounds both prestigious and downright stupid at the same time. Perfect for cancer you want to hate.

Now, here's where things got a little juicy and adds another layer to the name.

I looked up Limpus this morning, just in case it was like a murderer's last name or had too much baggage tied to it, and I found this:

Initial reaction: "Woah… I just named my cancer something that brings to completion anything it starts…"
Got instant chills.

Now this might seem like I'm playing with fire or fate or something. I'm naming the thing that could kill me something that will complete it's mission. I've never been a poetic or artsy sort of person, but this feels like it's in that realm. It's giving Oedipus-energy (minus the weird family stuff).

I thought of a text that my friend David Sun sent me a few months ago when I told him I had cancer and sent him the first Kobro's Cancer Crew update.

Love that — "worthy opponent".

Then a few days later he sent this along (actually made me tear up a bit, as all of your messages have).

First, David Sun is a mega nerd. He often thinks in video game analogies.

Second, I like the idea of a worthy opponent to use in this fight. It makes it more … exhilarating.

Who's a better opponent than someone who "always brings to completion anything they start"? Clearly they haven't met KCC.

Besides, the fight was over before it began.

Scoreboard & Tattoo

The final tattoo will have to do something with a score board of sorts.

I want to quantify all the pain caused by Limpus, quantify the support from you all (the KCC), and show how the KCC was the clear winner in this battle.

Once again, this is a rigged game, KCC will win.

Now, how will we tally up the points and what does a point even mean in this context? How do we win points?

The short answer here is I'm not sure yet… would love to get any ideas if you have one.

• I don't want gifts to be a way we can win points (even though Mikayla and I have been blown away by the thoughtfulness from the food, gift cards, books, house cleanings, fuzzy socks, hats, blankets, and little knickknacks).
• I'll think more on this too, but please send ideas for how we can tally up points for the KCC.
• I'll also think on out how to quantify the past and current pain that Limpus caused.

Now, this might sound like a strange concept, but let me share a quick background on why this concept around quantifying something so abstract and human and vulnerable feels right to me.

So the way I like to understand the world (like a lot of people I'm guessing) is through quantifying things. Once I could properly walk and talk, the first thing I wanted to understand (according to Mom) was how much everything in the world costs.

It's not that I wanted things, I was just excited about the idea of trying to quantify and value something like a house or a car or a candy bar. We'd walk around our neighborhood and I'd ask Mom how much it would take to purchase every item I saw.

My baby sitter named Amy said the second I could draw when I was a kid, I drew a perfect replica of a dollar bill.

Side note on my view of money today: I don't really care much about money (but I do like the freedom and influence it can give me and coordination problems it solves in the world). The thing that gets me amped up about money is how it enables us to quantify previously unquantifiable things. Obviously there's more to money, but this is just what gets me jazzed about the topic. The book Debt, The First 5,000 Years by Anthropologist David Graeber is one of my all-time favorites that covers part of the subject.

Putting a number to something has always given me a sense of understanding of that thing. It's probably tied to a control complex of sorts, but that's for conversations with Michelle (my therapist).

For those who know me well, you also know that I keep everyone I've ever met on a spreadsheet. If you are on my "Personal board of advisors" you'd also know that I used to track and correlate different personal metrics like how productive I was (based on # tasks done & a few subjective measurements) and how that relates to my sleep.

Here's a graph from Q4 2020 that shows how closely productivity and sleep was for me.

All that said, this idea of quantifying something as existential as pain caused or the love and support I feel from others is very me even if it's a bit unsettling.

One other potential benefit of providing a structure around the support from you all (by putting a score on it) is it could make a more clear path for how to support. I've noticed that many of you (just like me if I were in your shoes) really want to support but like aren't sure how. I also don't know how to guide you in supporting and showing your love and care.

It's a weird sorta problem. There's some gap between you wanting to be supportive and me not really knowing how to ask for support aside from like moral and emotional support (which has been incredible). Showing love is such a funky thing I've always had a tough time wrapping my head around.

Whatever we decide is the scoring mechanism for KCC points against the pain points of Limpus, it will provide a structure for you to help in that way.

Half baked idea - but maybe we just use written cards as our metric? I have some from you that I cherish and I plan to frame / laminate all of them so I'll have them until the day I die at a ripe age of around 130. You just reading and responding to these emails also means the world to me, so maybe I factor that in?

I don't know, more on this soon. Will think on and excited to hear your ideas too.

SO! Summary & next steps:

1. I'm doing well — you'll hear more on PET scan and cancer stuff soon. Work's been a lot recently, so cranked this email out 5-9am so I could still get in a full day of Intros AI stuff in.
2. I'm getting fluffy, not quite fat. Not to worry, my ego could use a correction, and I'll get in shape after this whole thing is over.
3. You met Limpus, our arch nemesis. We discussed how Limpus means something that finishes things to completion, and is a good name for this villain.
4. I'm getting a tattoo (probably in fall after treatment) that somehow represents how KCC beats Limpus in this battle.
5. I like quantifying things, you shouldn't be alarmed that this is how I want to represent something so personal.
6. Sorry Kobrosky (and Gipstein) fam, gonna be getting a tattoo.

Next steps — let me know if you have any ideas around quantifying KCC's support. One current idea is written cards that lead to points. I still want to do a fundraiser too (my hair is still disappearing so doing something around that later in summer). That said, I don't like the idea of money or gifts being tied to this…

Also, this is a long email as is, so will be doing shout-outs in the next email! Appreciate you <3

Love,
David